May 2018 Favourites

May was a lovely month. The weather’s been gorgeous lately, for the most part, and with no major events going on it’s been quite a relaxing few weeks .But there are still various bits and pieces I’ve enjoyed, and want to mention in this latest post and video update. So I hope you find this interesting.

To start with though, I just quickly want to plug a couple of upcoming events in June that will interest some of you. They’re for people all over the world to join in with, not just the UK. The more the merrier really, as it will help to spread vital awareness in both cases.

Sue Ricketts talking to a lady at the Nystagmus Network table ,with a tall poster next to it giving details of the charity.June 20th will be Nystagmus Awareness Day, which is its new permanent date, having moved from November. This year’s theme is Nystagmus In The Open, where people are being encouraged to do outdoor activities to raise funds and generate awareness. Sue, who runs the Nystagmus Network, is opening her garden for people to visit, for instance. People are also being invited to submit their stories online to show how amazing people with nystagmus are.

The Aniridia Day logo is a cartoon style image of the Earth, wearing sunglasses, smiling and giving a double thumbs up. Curving over the top, in yellow text with black outline, are the words “Aniridia Day”. Below the Earth in bold black text is 21 June, and below that the address for aniridiaday.org.June 21st will then be Aniridia Day. This is the second time it’s been held, as it was a big success last year. This year’s awareness campaign is called Aniridia Sight, where we want people with aniridia to share a photo or video of a scene, and describe how they see it through their eyes. So the more people that get involved, the more we can show how varied the vision of people with aniridia is. And then there will hopefully be live webinars too, for people to discuss aniridia related topics e.g. doctors, researchers, people with aniridia, etc. If you’d be interested in doing a webinar on the day, please fill out the form to sign up.

So now that’s out of the way, let me tell you what I’ve been up to in May.

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March 2018 Favourites

Well, that’s an early Easter out of the way for this year, and I hope everyone had a great time. We had the typical bank holiday weather here in the UK – i.e. wet – but on the plus side we also had lots of treats to indulge on as well, so it’s been like another Christmas in that sense. Indeed, with the wintery weather still hanging around, you’d be forgiven for not realising it was spring yet. Still, just like February, once again the weather hasn’t stopped me from having another very successful month.

But before I get on to the details, I just want to very quickly mention a free event I’m attending in April that you might also be interested in. I’m not being paid to mention it, but I am one of their voluntary social media ambassadors. And regardless of that, I’m genuinely intrigued by the whole thing anyway, having never heard of it before, so it deserves a mention in any case. And I don’t want to bury it at the bottom of the post where nobody will see it.

So to quote them directly:

Naidex is Europe’s most exciting event dedicated to the disability, independent living and healthcare professional sectors. Taking place at the NEC Birmingham on the 25th and 26th April, this esteemed event provides cutting-edge exhibitors, world-class CPD accredited seminars, live demos, 1-2-1 advice and unparalleled networking opportunities, over two unforgettable days. And it’s absolutely free to attend! Register for your FREE ticket on naidex.co.uk!

There are bold claims there, I know, but in all fairness I’ve looked through the show guide listing the exhibitors, speakers and events, and it really is very exciting. PLus it is their 44th year, so they know what they’re doing. I’ll be there both days and will have no problem filling the time, and I will of course tell you all about it. But I recommend going too if you can – it’s free, so you just have to be able to get to Birmingham on at least one of those days, and you need to register for tickets on their website in advance. If you’re a fellow blogger who’s also going, and you want to say hello there or collaborate in some way in relation to it, you’re welcome to get in touch. And if you know others who might want to go, pass it on!

Ok, that’s all I have to say about it, I just felt it deserved a plug. Now let’s crack on with my latest favourites post and video, so you can see what I’ve been up to. I hope you enjoy it!

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Companions, Cuisine, Cinema & Comedy

This has been a fun week, because I got to spend time with some good friends who were visiting London for a few days, one of whom was celebrating their 30th birthday. They packed plenty in to their short break, having planned things out very well beforehand, and they really enjoyed themselves. I didn’t get to spend quite as much time with them as I was hoping to, but I did meet up with them on each of the 3 days they were here. So I thought I’d tell you about it, as we did a variety of fun things!

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February 2018 Favourites

Well, what a way to start a new month, with snow all over the place! Winter has seemed very reluctant to let Spring take over, but hopefully things will warm up in the coming weeks now.

And the cold weather didn’t stopped February from being an eventful month. Following on from my January 2018 Favourites, it’s now time to look through what I’ve been enjoying in February. And even though it’s the shortest month, I seem to have packed quite a bit in! So I hope you enjoy this post and video for February.

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Rare Disease Day Photo Challenge

Update (March 1st) I won the challenge, much to my surprise! Thank you so much to Rare Disease UK! It was great fun being involved, because I loved the theme of the campaign, and I really enjoyed seeing other people’s photos. So very well done to all involved. We can all be proud of our efforts to raise awareness during the month! 🙂

Happy Rare Disease Day! 🙂

Today is a wonderful international opportunity to raise awareness of rare diseases, conditions, disabilities, etc, to educate people and highlight the need for greater funding and research. Here in the UK, it’s led by Rare Disease UK. But there are events taking place worldwide, so there will be related organisations in many countries.

1 in 17 people have a rare disease, meaning it’s a lot more common than you might think. So even if you don’t have one yourself, chances are you know somebody who does. And if you do have a rare condition, you’re certainly not alone.

There are over 6,000 rare diseases, affecting over 300 million people worldwide (including 30 million in Europe). That’s a huge number! So this is a day for all of us unusual rarities to get together, along with anyone and everyone who supports us and the cause in any way.

This year, the theme is “Show your rare, show you care”, and everyone can get involved, regardless of whether or they you have a rare disease. So that includes patients, families, carers, medical professionals, policy makers and members of the public.

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January 2018 Favourites

After a very eventful and successful 2017, I’ve been looking forward to seeing what 2018 would bring. And this year I want to try and get into the habit of doing monthly favourites posts, so you can get a good overview of what I’ve been enjoying, both out and about and at home. That way I can cover little things that I wouldn’t otherwise mention, as well as the bigger stuff that I’ve written longer posts on, which I’ll link to here.

So this is the first post, for January. This month I’ve been mostly doing things indoors given the cold weather outside. So I’ve been going out to various museums, and have also been to the theatre, while at home I’ve been watching a couple of the DVD sets I bought last year, to catch up on those. And I’m also making an effort to start listening to more audiobooks this year, as I only did one in 2017, which was bad of me (although, to be fair, book-reading wasn’t top of my to-do list having just moved to a huge city!).

So I’ve been keeping myself entertained in various ways, and I hope you enjoy this post and video recap of the month!

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Harry Potter – A History Of Magic

As well as the Harry Potter Studio Tour I explored earlier this month, I was also lucky enough to go to the British Library last Monday, for their exhibition on Harry Potter – A History Of Magic. This has proven to be extremely popular, because all of the tickets are now sold out online for the rest of the run (though it may be possible to get a ticket on the day you go to the library if you’re lucky). So I feel very fortunate to have had a chance to see it. Big thanks to Emily from Fashioneyesta for inviting me to explore it with her. We had a lovely afternoon, so that’s what I want to tell you about here.

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